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1.
Pediatrics ; 142(Suppl 2): S17-S33, 2018 10.
Article in English | MEDLINE | ID: mdl-30275246

ABSTRACT

Steadily improving management of Duchenne muscular dystrophy (DMD) continues to lead to improved physical and functional status, allowing increasingly successful transitions to independence and self-actualization in adulthood. Rehabilitation principles remain key to overall management for individuals with DMD with increasing options for ever more successful management, reflecting a changing natural history based on the use of glucocorticoids, more consistent comprehensive care, and the emergence of disease-modifying treatments. Advances and expansion in assessment, cardiorespiratory management, preventive management of contracture and deformity, assistive technology, "smart" technology, and robotics with increased emphasis on function, participation, self-advocacy, and independence in decision-making should allow individuals with DMD to experience childhood and transition to adulthood with support that allows for increasing success in the achievement of individual goals and fulfillment across the life span.


Subject(s)
Exercise Therapy/methods , Muscular Dystrophy, Duchenne/rehabilitation , Child , Humans
2.
Pediatrics ; 142(Suppl 2): S53-S61, 2018 10.
Article in English | MEDLINE | ID: mdl-30275249

ABSTRACT

Advances in treatment and multidisciplinary management have resulted in improved survival of individuals with Duchenne muscular dystrophy (DMD). Updated DMD treatment recommendations as found in the 2018 DMD Care Considerations are aimed to assist multidisciplinary care teams in providing standardized care to their patients, including attention to nutritional and gastrointestinal health. Challenges remain for care teams in accurately estimating height and nutritional status for individuals with DMD. It can be difficult for patients to maintain a healthy weight. Risk factors for obesity include glucocorticoid therapy and loss of ambulation. In contrast, in the later stages of the disease, swallowing dysfunction can lead to poor nutrition and consideration for gastrostomy tube placement. Constipation is highly prevalent, underrecognized, and undertreated in DMD. With this article, we address the assessment and management of gastrointestinal and nutritional issues, as well as clinical controversies.


Subject(s)
Gastrointestinal Diseases/therapy , Muscular Dystrophy, Duchenne/therapy , Nutrition Disorders/therapy , Gastrointestinal Diseases/etiology , Humans , Muscular Dystrophy, Duchenne/complications , Nutrition Disorders/etiology , Nutritional Requirements , Nutritional Status
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